The nine-hour neurosurgery
An attempt to put words to an indescribable experience.
As I write this, I can’t look right. To be more precise, when I look to my right, my vision is double. It’s been this way since I woke up from my surgery 10 weeks ago, and it’s a constant reminder that I’m still healing. When possible, I wear an eye patch over my left eye to strengthen the right one, and the pirate jokes have grown cold by now. All I can do is wait.
I expected to share more updates in the days following neurosurgery to remove the remaining piece of my pituitary tumor. Going into the surgery, I was feeling cautiously optimistic after a beautiful few days outside in the Bay Area of California (where my family and I had nervously traveled to during the pandemic because it was the only option.) But both the surgery and recovery ended up being so much more extensive than anticipated that it’s been hard to even process what I’ve been through, let alone put it into words. But I’m going to try.
On February 22nd in Palo Alto, 8:15AM local time, doctors administered anesthesia for what they anticipated would be an approximately four hour procedure through my nasal passage and into the center of my head to remove the medial wall between my pituitary gland and carotid artery. The purpose was to access previously unreachable excess tumor cells leftover from a prior surgery and successfully remove them. But once my neurosurgeon, Dr. F, got inside my head, he soon realized what he and his team were dealing with: some of the most stubborn and fibrous tumor cells they’d ever seen.
Nine hours — that’s how long it took Dr. F to remove the many fibers tethering my tumor cells to the medial wall one by one. Some were so stubborn that he needed to essentially burn them as an alternative method of removal. There was also a small leak from my brain that was sealed up using a flap from my septum. Wild stuff.
The best possible way to describe waking up from nine hours of anesthesia is imagine being born as a fully grown adult. At first I couldn’t see at all and could only cry. I loudly sobbed for reasons I didn’t understand, and when my eyes eventually opened, it felt like I was the only person in the world. As I continued to regain consciousness, I yearned for reassurance that I was OK — and for some water. And after getting a glimpse of the clock, I wanted to understand how it got to be 6:30PM.
I got none of that. I could talk about the disinterested nurse in the post-anesthesia area who ignored my pleas for assistance, or being rushed to a CT scan to make sure my brain was functioning ok, but it’s all a blur of experiencing the worst pain I’d ever felt in my life, and knowing I’d need to soldier through the next few days by myself because Covid restrictions allowed for zero hospital visitors. Though there was a staff of people, I knew that I only had myself.
Hours later when I was finally in my hospital room, Dr. F came by to tell me a bit about what my body had been through. (It’s an odd sensation, being told about something you experienced but of which you have no recollection.) He told me it was “one of the hardest” tumors he’s had to deal with in his career. I told him about my distorted vision, the numbness in the left side of my face, the roof of my mouth and the tips of my fingers. He assured me it would all resolve, though he couldn’t say exactly when. Even he, the visionary surgeon who pioneered this life-changing technique for Acromegaly patients like me, looked a bit stunned by what he’d just been through. Nothing had gone to plan for either of us.
There’s no way Dr. F could have anticipated how challenging it would be. An MRI shows you the size and location of a tumor, but it’s more of a flat map than a 3D model. So while the tumor cells appeared manageable beforehand, their texture was unknowable without going right to the source.
I somehow managed to be released from the hospital two days later since my vitals were strong and the side effects I was experiencing would take weeks or months to resolve. Despite the unexpected twists, Dr. F and the other doctors involved thought the surgery went really well, which was impossible to believe given how shitty I felt.
Leaving the hospital is always a great feeling. There’s this hit of adrenaline, like you’re making a great escape [in a wheelchair with all your belongings piled on top of you like a snail.] I had this foolish notion that despite not being able to breathe through my nose, see, smell or taste properly, or walk or shower without supervision that my recovery would be similarly swift to my last tumor removal surgery. I kept forgetting about the nine hours.
So I retreated to our Airbnb and proceeded to spend many, many hours on the couch, while wearing a gauze mustache to catch the many fluids leaking from my sinuses, unable to watch tv or read because of my vision. For the first week, I wasn’t able to walk past the end of the driveway.
My parents and Ben became my nurses, tending to my every possible need. It reached a point where my dad would sense that I had woken up in the middle of the night and would come downstairs to get me water or grapes to get the horrible taste I developed from breathing exclusively through my mouth. All three of them cared for me without a single reservation or moment of complaint, and yet I still felt immense guilt for putting all of their lives on hold so that I could get a few tumor cells out of my head.
And after four weeks of feeling like something wasn’t right, I ended up going back under anesthesia for a follow-up procedure — but that’s another story for another time.
Just like last time, the three month post-surgical MRI and blood work will tell the true story of whether or not the entire tumor was removed. If anything shows up on the MRI, obviously it wasn’t. If my IGF-1 hormone levels remain elevated, it likely wasn’t. All I can do at the moment is keep up with my nasal rinses, be as active as I can tolerate, and try not to seize on any possible sign that the surgery wasn’t a success.
And keep wearing my eye patch.
